Friday, April 24, 2015


Last night after dinner I got an email from my neurologist. Negative. It actually said this: "Normal results with no evidence of multiple sclerosis on this test." 

It was what I expected, but I didn't expect to sob like a baby. I dropped my head into my hands and cried in surprise: surprise I was crying, surprise that it was really negative, surprise that I had all that crying inside me and I didn't know it.

I've been thinking about where to go from here. It was December 2013 when I first asked my eye doctor about my double vision- how things would just suddenly separate and sometimes go back together, sometimes not. "It's nothing." he told me- but six months later I was not convinced. In three trips to the ophthalmologist last summer they couldn't figure out where the double vision was coming from, why it was happening. That, coupled with the weakness in my arms and hands, as well as the more than normal fatigue didn't make any sense. It was July of last year when they told me I needed to see a neurologist, then I had to wait five months for an appointment. Then wait three more months for a follow up. Then another six weeks for the spinal tap. I suppose I could have cried from after dinner into today for all the waiting and wondering I've been doing.

I am so grateful for all the positive things that have come from possible scary diagnosis situations: in December 2014 when I had the MRI there were no brain tumors or bleeds, or cancer. When the EMG and blood work came back negative for Myasthenia Gravis. And now- another good news, no MS! but it still leaves me wondering. Is it just stress? Am I internalizing things that much? What the fuck is wrong?

Part of me says to stop trying to define it. To just eat right, do yoga, walk, and be patient. To embrace the good that has come from this. (The possibility of being in a wheelchair makes you really appreciate your two feet on the ground just walking.) Another part of me wants answers. To be able to treat it, to fix it. I'd be willing to do what it took if I only knew what it was. Neither part really gets what they want. So it's just not time to move yet.

Being sober in this situation has helped me zero in on the few simple things I need to feel most my self. It has made me even more grateful for my sobriety- that I was here to handle a tough situation and not getting drunk to avoid it. I try to not get pissed about being sober and now things are wrong- I know my sobriety gives me the grace to be a person about it rather than being a drinking mess about it. They call booze "liquid courage" but I'd call it "liquid fear".  Drinking never made me brave enough to face my life at all, much less a long drawn out mystery like this. Being sober has given me the ability to face this eyes open instead of closed in anxiety and afraid. It has given me the courage to look straight at what's coming and not be scared because I know I am capable, trustworthy, and loved. I can handle the truth.

I am so grateful for all the support y'all have given me. It has helped so much to read your kind and thoughtful comments, to get emails that say supportive and funny things. I'm just going to go on, business as unusual from here: being sober, taking good care of myself, learning and practicing living this lovely life with a courageous open heart. I am filled with gratitude and humbled by the grace of it all.

Thursday, April 23, 2015

Surrender, Again

I've had my spinal tap/lumbar puncture- which was, as things like that go, quite fine. The worst part, besides getting a needle stuck deep into my spine, was laying down face first on this bench-ish thing with my pants halfway down my fanny. Duke is a teaching hospital so there was a guy student in the room and that made me feel sort of weird, and kind of old? Like, um, hey? I don't want this kid who isn't really even a doctor or a nurse yet looking at my sweet vulnerable little butt. It gave my eager brain something to work on while the doctor numbed my back and got things going.

There aren't supposed to be any results until maybe the end of this week, probably next week. BUT! Last night I got an email from my neurologist that said everything is normal so far. Therefore I am feeling cautiously super optimistic and then also grumpy frustrated: if not MS then what is going on?

What is going on? I can't rightly say, nor can modern medicine it seems. Which is fine, really- it is. I've been doing a lot of yoga reading and practicing lately. Yesterday on that thin table with the half moon X-ray machine and half my fanny hanging out I remembered that I needed to breathe. So I did, and I almost disappeared. There are all these moments that are really just this one moment: this one changeable flowing uncertain moment that makes up a lifetime.

There is too much going on in my life right now- some good, some hard- but what else can I do but keep going? Last night after I got the "normal so far" email from my neurologist I let the dogs in and our big guy is limping badly again out of the blue. I got so mad at the universe! "WTF?" I ranted in my head. "You fucking see me waiting to see if I have MS don't you? And that Jonathan is looking for a job? And that we might move in a year? What if I have to put the dog to sleep now? Too much!"

And then I started in on all the things I'm worried about. I started winding myself into a big fat tizzy, until I stopped.

Yo. I stopped.

I remembered that I can handle all these hard things, and all the good things too, because I can surrender. I can stop wishing the truth wasn't true and go with what's actually real. I can wait patiently for a minute while my mind/ego starts a tantrum and then in the pause let it breathe, let it know that it will all be OK. I stopped fighting it. I gave in. Yes, I told myself. Yes. It is too much. It's a lot. It's OK. And then I didn't have to handle it just right. I stopped predicting the future and stayed here.

Surrender is such a gift: it's not giving up, or giving in. It's accepting things as they truly are and going from there. Or from here: this moment where I might have MS, or I might not. Where the dog is hurting, where the job situation is exciting and uncertain, where we might move in a year (I know, a year! I can be a little neurotic). The thing about surrender is this: when you admit you don't know what to do that's when you get shown the way. Surrender is a graceful way of saying "Help". It's a way to say "I don't know"- I don't know how, I don't know what to expect, I don't know what to do. When you stop thinking you have all the answers- that's surrender.

When I quit drinking I had to surrender big time. I had to surrender everything I thought I knew about myself and be willing to learn what was real. Now I'm learning that surrender happens in big and little ways every day- that surrender is one of the strongest most power full words I know.

Wednesday, April 15, 2015

The Work of Reality

What a relief- to blurb and bleat all of my inner dialogue out into the world. Like sharing a too big secret, today things don't seem so big. They are the same, but manageable again.

Something I know about myself is that I am not good at asking for help, I'm not good at placing value on my own wealth of feelings. I tend to minimize things until they end up screeching at me. I was so angry that no one has been as scared as I have been, and in doing that I have been discounting my own self.

I had a couple good snotty cries. I told my husband about my fears, and I reminded myself to stand in my own two feet- that even if it sounded totally stupid it wasn't.

Blasted reality. There's the way I want to see the world, and then there's the way things really are. I've known for a while now that it's much simpler to accept the things that are true rather than wallpaper and shellac over it. It's when I forget the security of surrender that I start to feel frantic and too big for my skin.

I went back to bed this morning and slept. I did some yoga. I meditated. I didn't have coffee. I could have gotten up, poured coffee down my throat, and forced myself through another day. But I didn't. I'm thankful that I'm learning how to recognize what I really need, and to ignore what I want, and then actually do the things I need. Whoa.

I'm still afraid. I'm still thinking about all the unsure-ness about the future. It's true that the one you feed is the one that gets stronger. So I'm going to feed the one that keeps me grounded. And I'm going to remember if I'm behind a wall and I'm on fire I have to make sure that someone, even me, can see the smoke.

Tuesday, April 14, 2015


Something happened to me at acupuncture today.

I realized I'm doing the thing I do: going backwards when I'm starting to head forwards. Goddammit.

So, I've been going to acupuncture for about 4 months now. It has helped my double vision. It has given me insight into what I need help with, what I need to pay attention to- my blood, my digestion. It gives me a solid hour of meditation that is usually useful. A month ago I was in a good healing place. I realized today that I'm on a steady slow backslide.

I wasn't happy with my earlier post- but it was about things I've been thinking about and I have been pressuring myself to get a post out there. It makes sense that it was about slowness, and about my body, but the part that feels bent is that I can feel myself sliding into old comfy behaviors not after I'm way back into it but as they are starting. And it feels good and sucky and oh. Awful.

It's hard for me not to sugar coat everything. It's hard for me to be honest about the way I feel because I don't want to seem weak or even worse to burden anyone. This always puts the world on my own shoulders- me lugging all my own heavies around afraid to ask for help. Afraid everyone will think I'm stupid. Or that I'm a fake. Or that I'm lying to get attention, or that there are people with actual real problems in the world and I should just be quiet, please.

My acupuncturist is insightful and quietly curious. He put all my needles in and asked me a question before he dimmed the lights and started the chime-y music. "What's different now?"

I almost started weeping right then and there- but y'all. I just couldn't. Instead I said the thoughtful thing instead of the feeling thing. I said I thought I wasn't going all in- that I was backing out at the last minute like I'm prone to do. We talked for a minute about slowly bankrupting yourself, and then about how I'm around people who drink a lot a lot of the time. He said, "That's difficult." in a statement-y way that comforted me. I mentioned that I was worried now that my husband is out of school and looking for a job. He said, "That's hard too. Not to mention kids, and life, and marriage. Tell me if you need anything." Then he left me on my own.

My dear friend Sherry wrote this amazing post that I haven't been able to stop thinking about. It was so honest, and upfront, and truthful. It made me start to look at how I'm really feeling, and then today I just had to face all the things I'm afraid of and let it be hard.

I am dying for a sober/recovery outlet. I have got to get myself into another group, or find a good meeting to go to. I need some more like minded people around me. I won this giant bottle of wine at work and not one person thought it was a strange thing to give it to me. Um...hello? I am an alcoholic. Holding out a giant bottle of fabulous wine is not the best prize for me. I do not have enough people in my life that understand where I'm coming from. At all. Even my husband is insensitive to what it feels like for me to not be able to drink, for what it feels like for me to serve wine and watch everyone I work with drink every night I work. People still come up to me with terrific wine and best intentions. "Taste this?" they say. Then "OH, I forgot. Want a smell?" Being around half drunk people at work is annoying. My husband is working at the restaurant again while he job hunts. Staying after work for a glass or two of wine and to "hang out". It feels like because  I am successfully sober he has forgotten that it is actually still a struggle, and he feels resentful when I say it bugs me when he drinks.

I feel like no one notices or cares about all the sacrifices I make to stay on top of my health. I don't drink alcohol or use any other substances to take the edge off. I handle all my shit just as me: no prescriptions illegal or otherwise. I'm still working two jobs. I'm still handling the bulk of the housework, caring for the dogs, and sharing care of the kids. Plus dealing with both sets of our parents when it comes to those logistics. The kids' social lives, plans for the summer. What kind of vacation we want to take. Can we afford it. I have to quit caffeine again because as un-fucking-fair as it is I can't have it if I want to get good sleep. Not to mention the fact that I can't eat pretty much everything else because it aggravates my MS-ish symptoms. So no dairy, or gluten. No grains, no beans. No sugar. But then I get bratty and eat a biscuit. Or we get a fire pit and make s'mores and I just want to be a regular mom that can eat a fucking toasted marshmallow on a graham cracker for gods sake. Or I have all these strong things come up for me at acupuncture and while I really just need a good cry and some support I instead have to pick the kids up at after school and make dinner on my own because my husband is at work and I don't see any other support except to hold on tight and write when I get the kids to bed. My youngest has been in twice already to be scared of a knocking noise and to remind me that he finally has a loose tooth.

And although I love him to pieces I just want to be left alone. I feel like there's the part of me that needs to just cry and pout and shout and wallow and heal and then there's the me that I am in my day to day life: holding on for one more day. Being all I can for all my people and keeping it together so no one can say I can't handle it or see that I'm kind of falling apart. I sometimes fantasize about having a nervous breakdown or almost hope that I do have MS or something else definable wrong with me so that people with be more tender with me, that people might recognize that even though I might make it look easy I am fighting mightily under here and then they could offer me a blanket and a break. That instead of my mother saying things like, "Oh, you're so worn out, so stressed out." or "Yeah, you're handling it" with that unsaid "not so gracefully" or "I'm not going to worry about the MS thing until it's actually true" that she might call me and say "I know you're worried. It's OK. You should worry some. That could be scary. I'm here for you."

Lying there in the dim and the chime at acupuncture I thought about how I need to take things more seriously to be taken seriously. That I want to and need to be all in. Then I came home and ate my proper dinner, and then promptly ate half of the kids' unfinished chicken and cheese quesadillas and almost a whole bar of chocolate telling myself the whole time that I might as well since the liverwurst I had earlier had a little surprise dairy in it and so whatever, I'll get serious again tomorrow. And then I broke off a big piece of easter bunny and ate that. I've been doing so well for 34 days now, and today I finally broke and ate all the feelings that came up.

We all struggle. And here I am: struggling. I'm tired of doing it alone. I'm tired of always being fine and never being weak. I'm afraid. What if I have a disease that could put me in a wheelchair? And why won't any of my people feel afraid with me? Why do they all blow it off like it's nothing when it may well be nothing but I need someone to sympathize with my fears that it could be something?

I feel a load better just writing all that out. I'm so grateful to have this blog, and people out there to read it, who give me kindness and support- it helped to know while I was writing this that I would be heard. That I am never alone in the world. Thank you.


I've had a couple of oh wow moments this week- I'm reading this book and this book and both are so much food for thought that I've just been reading voraciously and trying to get into my head space but totally out of my head space.

The Recovering Body has been such a terrific reminder that my body is just as important as my mind, if not even more important. I spend so much time finagling and think-a-ling that I forget to listen to my own messenger. Then I'm surprised that I'm so hungry, or sooo a little cranky, or sooooooo almost overwhelmed and needing a minute. But my body isn't surprised at all. "Duh!" it wants to tell me. I told you we needed to eat like over an hour ago. Or a sarcastic "Shocking!" when I feel twitchy and realize I need a little minute. "Remember how you felt that in your gut a while ago?" I count too, my body is speaking up to say, and slowly I am learning to listen.

I have spent a goodly amount of years on this planet feeling so mad at my sweet body. Mostly mad because I am not 5'7" with coltish legs like I was sure I was meant to be. I am coltish, but more in shortish sturdy donkey way. Mad that I have freckles, and a gap in my teeth. Mad that I can never look in the mirror and be glad to see myself. Many of those same years were spent abusing my body, and my body just kept on showing up: no matter how many times I bulldozed over myself I would always uncrumple the next morning and somehow keep on being alive. It was all like the ultimate fuck you to myself. How could I be such a bully?

Why have I never just told my brain to sit down and shut up? My thinker is always right up front arms waving pushing for all the attention. It's so exhausting maintaining a relationship with myself sometimes: it can't ever just be me, and my body, and my brain biologically meeting for tea. It's the three of us, bratty brain bullying my simple body into submission. In the battle of wills we are all losers I think.

Plus, my brain is the thing that talks me out of all of my good ideas. "Mmmmm, yoga" says body. "BLAH BLAH BLAH no time not in the mood" says brain. "I want to work on my chair" says body. "BORING!!!!" says brain. "Sit down and write" says body. "YOU SUCK AT THAT!" says brain. "Please quit drinking. We have to." said body. "BUT WINE IS SO GOOD!" said brain.

Since I finally was able to listen to that one I feel much more qualified to hear this other stuff. I meditated three times last week and it was hard but lovely. I am going to keep doing that- the relief I feel deep down from the quiet rather than the chatter is palpable. Instead of pushing myself in yoga I've been doing restorative classes online- lots of props and support and surrender. Slowly making all of me strong instead of thinking about weight or what I look like. Taking care of my self rather than my image.

It's a damn hard thing to love all of oneself. Eastern Body, Western Mind has me thinking about Chakra one: how I am safe and grounded to the earth. How to have a steady base I have to have a steady base. And that base is my body. How to feel safe and rooted I have to NOT be the one abusing myself: either with booze, or food, or words, or criticism. Slowly getting back to the basics like I have plenty of time.

All of this winds up with me doing a lot of thinking, but a lot of not thinking too. I made me think of this: I am mostly so grateful all of this happens slowly. I need time to get my feet under me, to feel them touch the ground and support me fully. Time to breathe. Time to listen. Time to get to know me- and my body.